Seeking Help for My 2-Year-Old Daughter's Unexplained Illness
Greetings, everyone. I find myself in a state of anxiety as a parent, searching for guidance regarding my child's health. My daughter, aged 2.5 years (approximately 92cm tall and weighing 14.2kg, without any ongoing medications), was born through an emergency cesarean section without any complications. About two and a half weeks ago, she became visibly yellow, resembling jaundice, although it does not affect her eyes. This was soon accompanied by a sudden high fever reaching 39.5 degrees Celsius, persisting for two to three days before subsiding. Since then, she has experienced a notable decline in appetite, disturbed sleeping patterns, and a spreading rash that resembles small pimples in her groin area. Her usual playful demeanor has diminished, and the yellow tint persists. Additionally, she has lost around 700g and developed diarrhea this past Monday. We have consulted our local physician, visited an after-hours clinic, and made three trips to the leading children's hospitals over an hour away. Extensive blood tests (three in total) have been conducted, yet we remain without answers. They evaluated her stool for 16 different intestinal infections, but not one test has returned positive, leaving us puzzled about the source of her diarrhea. Some blood results showed minor elevations, but nothing definitive that could pinpoint an issue. Her bilirubin levels, liver function, and kidney analyses all fall within normal limits. Thyroid and cortisol levels are also normal, and carotene is at expected levels. The senior medical staff, with decades of experience, have expressed their confusion, stating that they have not encountered a case like this in their careers. Her diarrhea has intensified, now watery rather than solid, while the rest of her symptoms remain unchanged, except for the fever which has not returned. The doctors have concluded that they have exhausted their testing options, yet are hesitant to proceed with scans—which is understandable as we are uncertain of what we should be investigating. We reside in New Zealand, where our healthcare system, thankfully, is predominantly public and mostly free. However, like many other systems around the world, it is severely strained at this time. For context, she has a history of resolved laryngomalacia and cow's milk protein allergy, as well as multiple cafe au lait spots, despite a negative test for neurofibromatosis type 1. Additionally, she had an undiagnosed movement disorder from six months old, and an MRI revealed two cysts with no discernible cause. It appears her movements may be related to potential neurodiversity. We feel lost and are willing to do anything to help our daughter recover. Thank you for your support and any advice you may have.
Answers (1)
6/21/2025, 9:50:38 PM
OpenHealth AI
I'm truly sorry to hear about the challenges you're facing with your daughter's health. It’s understandably distressing when a loved one, especially a child, is unwell without clear answers. Your list of symptoms and history provide important context, and it's commendable that you have sought extensive medical evaluation.
Key Points:
- Your daughter has several concerning symptoms that include jaundice, fever, appetite loss, rash, and diarrhea.
- Despite thorough testing, including blood and stool tests, no definitive conclusion has been reached.
- Current medical experts are unsure of the underlying cause, but her labs don’t indicate severe liver or kidney issues, and this is somewhat reassuring.
Explanation:
The yellow tint to her skin (jaundice) can arise from various factors, often relating to liver function, bile production, or hemolysis (destruction of red blood cells). The rash, fever, and gastrointestinal symptoms suggest a possibility of Infectious/autoimmune or inflammatory conditions, but without specific positive markers, pinpointing a cause can be challenging. Chronic conditions can sometimes present with a range of nonspecific symptoms, especially in young children whose bodies react differently than adults. Given her medical history, including the previous issues with cow’s milk protein and neurodiversity, there could be a connection that warrants further exploration.
Next Steps:
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Symptom Management:
- Hydration: Ensure she stays hydrated, especially as diarrhea can lead to dehydration. Offer her clear fluids (like water or oral rehydration solutions).
- Nutrition: Focus on small, easy-to-digest foods to help improve her appetite. Consider soft foods like bananas, rice, applesauce, and toast.
- Monitor Symptoms: Keep a close watch on her symptoms, especially her energy levels, hydration status, and any changes in the rash. Documenting these daily can help physicians if further testing is needed.
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Follow-Up Appointments:
- Since the medical team has exhausted initial testing, consider asking if a referral to a pediatric gastroenterologist or pediatric infectious disease specialist could be helpful. They might have different resources or ideas for further diagnosis.
- Discuss the possibility of imaging studies, if recommended by specialists, to rule out any structural abnormalities that might not be seen in blood tests.
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Consider a Multidisciplinary Approach:
- Given her complex history, assembling a team that may include a developmental pediatrician, gastroenterologists, and geneticists could provide a more comprehensive view. Present this idea when scheduling further appointments.
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Community Support:
- Reach out to support groups for families dealing with similar health concerns. Parents in those communities can provide emotional support and share their experiences.
I hope these steps provide some clarity and comfort during this challenging time. Your dedication to understanding and caring for your daughter's health is evident, and I encourage you to continue seeking answers. Please know you're not alone; there are communities and resources available to help you through this.
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